Revised digital health and care records sharing standards published by PRSB
- 13 August 2018
Revised standards to improve the sharing of digital health and care records have been published by the Professional Records Standards Body (PRSB).
The “PRSB Standards for the Structure and Content of Health and Care Records” set out the standardised information that should be gathered and shared in care records, which can then be exchanged digitally across the NHS and social care.
The revision of standards aims to improve the sharing of digital health and care records by supporting communications between different systems. The standards are aligned with Fast Healthcare Interoperability Resources (FHIR).
When combined, it is hoped standardised care records and FHIR technology will allow information to flow directly from one IT system to another helping people to access safe, high quality, timely and efficient care.
The work forms part of the PRSB’s drive to improve the use of information and technology within health and social care.
Maureen Baker, chair of the PRSB, said: “We now have the key ingredients that health and care services need to join up information anywhere, at any time in the system.
“With the publication of the PRSB revised standards aligned to FHIR technology we are now poised to deliver truly shared care records and reap the benefits of safer, better, more efficient care.”
The standards have been published by the PRSB in collaboration with NHS Digital and the Royal College of Physicians Health Informatics Unit.
In a separate story, the PRSB published new standards for sharing information to support people with long term conditions in March 2018.
The digital care and support plan standard is centred on those living in the UK with long term and complex conditions. It sets out the key information that needs to be gathered, recorded and shared in a care plan.
21 Comments
Bertl, it seems you’ve copy/pasted comments from elswehere. FHIR is a worldwide standard for exchange of information. Its not just about a care.data2 conspiracy.
The use for direct care, and abstracting for planning and audit cannot be entirely divorced, as there are important opportunities we are currently missing to create decision support which feeds directly back to patient care, and I for one would value a junior doctor having validated decision support at his/her side.
Yes we need safeguards for protecting identity. I think that the patient juries in Sheffield and Leeds, when the use of data was explained in detail to them, were mostly content, even where companies involved made modest cash out of the service. Remember that the NHS pays drugs companies huge amounts of money for improving care.
Being anti-everything in this space is damaging to progress. Its OK for Amazon to predict what book I want to buy, but not for the NHS to use information it holds intelligently to spot a life threatening illness for me. Sorry I don’t understand your problem.
Excuse me, I have not copied and pasted comments from anywhere and any views I express are my own. If you don’t understand my problem, that is another matter. I have been living with the problem for nearly five years and it is a complex problem, not really suited to being explained in one paragraph. You are free to disagree but kindly don’t try to patronise me.
On second thoughts, I offer the following brief description of what my problem is – take it or leave it.
The transformation of the NHS that is being driven by the Government and NHS England, acting in concert, is basically being driven by two stupid and very destructive ideas.
STUPID AND DESTRUCTIVE IDEA NO.1
The first stupid and destructive idea is the idea of coupling Health policy with Industrial Strategy. The idea is to engage industry (particularly bio-medical and digital industries) in addressing healthcare problems, by feeding them lots and lots of health data. By doing that, they believe, they will both harness the resources of industry for the improvement of healthcare, and harness the opportunities for development of healthcare to drive industrial and economic growth.
THAT SOUNDS FINE – WHY IS IT A STUPID IDEA?
It is a stupid idea because the idea that the resources of commercial organisations can be harnessed to anything but making money is a crass fallacy. This will drive healthcare in the wrong direction, while everyone will believe the very destructive idea that that more technology can be equated with progress and will solve all the problems. That is a very long way from the truth.
STUPID AND DESTRUCTIVE IDEA No.2
The second stupid and destructive idea is that, in order to be sustainable, the NHS must control and manage how individuals use the health service. An individual’s path through the NHS must be managed by a group of health professionals, not by the patient accessing profession advice where they need it and directing their own path through the NHS. In order to achieve this control, the NHS must be organised by locality based teams, who must have lots and lots of information, indeed “complete” information, coupled with powers of surveillance and control over how patients move through the NHS. Both individual autonomy and the right to confidentiality must be removed from individual patients.
THIS DOES NOT SOUND FINE – BUT WHY IS IT PARTICULARLY STUPID AND DESTRUCTIVE?
This is an outdated and unenlightened industrial model of efficiency, based on the false assumption that individuals have nothing to contribute to the process except as controlled parts of the machinery. Industry is no longer stupid enough to work in this way and, by adopting this antiquated model, the NHS is refusing to use its most valuable resource, which is the intelligent interaction of health professionals and patients, within a relationship of trust. That has been ruled out by removal of confidentiality and removal of individual autonomy.
Having read the standards, they make a good deal of sense to me. In particular standardising the form and content of transfer of care documentation. If you follow the links, the details are located at https://theprsb.org/wp-content/uploads/2018/07/3950-PRSB-digital-PDF-online-version-v4-small.pdf
Excellent data processing and excellent standardised care are not mutually exclusive, ideally the first flows from the second. These new standards provide a framework for delivering improvements across the board. FHIR simply enables the standardised information to flow electronically.
There is little point in having great looking EHRs without an agreed record management standard which enables clinicians to do their job in a consistent manner regardless of geography or EHR supplier.
As a patient, I expect the clinicians delivering my care to have quick access to easily understood information about my care delivery. This is difficult if my care records are not maintained and then presented in a consistent manner.
This isn’t rocket science, but neither is the laying of foundations in architecture which literally underpin the buildings we live and work in.
I am inclined to feel that FHIR and interoperability are all about facilitating inappropriate data sharing and have little to do with appropriate data sharing. If anyone was interested in improving patient care, we would all have the facility for encrypted person to person sharing of records, so that only the intended person can read them. FHIR is about facilitating mass record processing and mass record sharing, which is the last thing that will improve patient care. This is part of the UK’s industrial strategy, not a part of improving health. It is to facilitate sharing our personal confidential information with half the world, his wife and his dog.
Yes the process we are digitising is very old. We don’t need to send documents just in case someone may read them (and in many cases they will just be filled away in a GP system).
We now have a large number of document stores, why not just share them and they are accessed IF NEEDED.
Why not? Because (1) massive stores of confidential information are a magnet for cyber criminals, (2) the people who have pillaged these documents without consent manifestly cannot be trusted and do nothing but lie to us about everything (3) supposed opt-ots from this collection are fraudulent and are always ignored, illegally overruled or circumvented using “sufficiently anonymised” or “de-identified” data that is neither anonymous nor unidentifiable (4) the whole purpose of these data collections is to sell the data and we have no control over this whatever. Before trusting NHS Digital have a look at the (fully justified) findings of the Health Committee Inquiry into the Memorandum of Understanding between NHS Digital and the Home Office. The oral evidence session of 15 March in which the CEO and the Chair of NHSD give evidence reveals attitudes that are absolutely chilling, as the Health Committee realised. The role of NHS Digital is to supply data, not to protect it. Also look at Lord Mitchell’s letter to the Financial Times of 5 March 2018. His big concern is that the NHS will not get the best price for the “treasure trove of longitudinal patient data” that they “own” [sic]. People need to wake up to what is really going on if they believe the propaganda. If I want to share relervant medical records for the purpose of direct care I am perfectly capable and at liberty to do so. No vast national database is necessary.
You lost me a bit with your reply.
We don’t need any big data stores (other than what hospitals have already done) and certainly nhs digital shouldn’t be doing that.
I believe it’s wrong for any nhs provider to prevent access to my records if they are providing me care (and I should also have access).
This can all be done safely with off the shelf, secure and heavily proven stadards. Without resorting to big databases from two decades ago.
It is difficult to ascertain the details because, in the nature of the case, these are being concealed. But first, NIHR HIC are coordinating and ever growing virtual library of data sets that are available for research. These data sets contain patient level data – meaning identifiable data that can be linked to other data relating to the same patient. Various hubs (Hospital Trust + University + Research Centre) are custodians of data sets on specific diseases and the number of these data sets is ever growing. NHS Digital is involved in this, as the custodian of HES data sets, one for outpatients and one for admitted patients (not sure about A&E). NHS Digital are also custodians for the Primary Care Data set (which is or will be national).
Care.data has not gone away for one moment – it just lost the name so people would think it has gone away. NHS Digital will be extracting data from all GP records. They are pretending that they have not decided whether to scrap the Type 1 opt-out, but that is almost certainly the intention. What I am not entirely clear about – can anyone enlighten me? – is how this huge research database relates to their other strategy.
The other strategy is a solution to the problems around Care.data, which you will remember was to have been a huge national database of everyone’s linked up records from across care settings. The big idea was that if they implemented that idea at a local level, meaning STP level, it would be much easier to overcome resistance. NHS England specifies what every STP must be working towards, and lets each STP get there in their own way, gaining the trust of the locals. The end point is complete, comprehensive, longitudinal records from across all health and care settings, shared with all care settings, for every patient in England. Will Smart, the NHS CIO said in a speech in London on 16 May, that this “should be fairly easy to pull off within about the next four years”. When all the STPs have done the difficult bit, of gaining the trust of patients in their area and all the integrated records exist, then they just join up all the STP systems to create the National Data Lake they set out to create with Care.data.
As I said, the bit I can’t quite fathom is how this grand plan relates to the national research library being built by NIHR HIC. Perhaps they are separate, but the data sets under the custodianship of NHS Digital sound very much like the proposed national data lake waiting to be filled. Can anyone shed any light on this please? According to Will Smart, it is all going to be “pulled off” within about four or five years, but it would be useful to know what is coming. Forewarned is forearmed.
Person to person sharing of records? Seriously?!
How does that work when care is so often delivered by multi-disciplinary teams?
Visit an ITU, talk to cancer patients, spen a day shadowing a clinician and you might realise that medicine is complex and not just a series of one to one encounters. Even visiting my GP isn’t a one to one affair these days as I have to see whichever GP is available for a hurried ten minute consultation.
No-one goes into work planning to facilitate inappropriate data sharing. This article is about practical electronic health records, not data sets such as HES or whatever. EHRs need to be safely, securely and readily accessible by everyone delivering care.
I share some of your concerns about the sharing of my data outside those directly involved in my care – but let’s not conflate having good health record standards for direct care with issues surrounding the secondary use of data.
It’s not impossible, technology has allowed this for a couple of decades at least and in a number of ways it is easier to achieve.
With hindsight we should have gone for IHE XDS (document sharing) rather than CDA. It didn’t work and this PRSB initiative is simply a modernisation of CDA (which although it uses FHIR, it uses it differently to the main simple methods behind FHIR and so can be viewed as just an update to ITK CDA).
A purer version of FHIR is National Record Locator Service (NRLS), which is a form of document sharing that the majority of NHS trusts can implement using the documents stores they purchased and implemented for paperless 2020.
PRSB (+ITK) is a leap in technology that majority can’t do yet. Trusts can still layout the documents in a standard way (PRSB headings) and that is achievable.
Please someone ask the developers and stop theorising on what can be achieved quickly, cheaply and easily. We can also make it future proof to work towards structured documents.
We don’t need to send around documents (following century processes) which are probably just stuck in a database and not looked at.
I would like to think that records for direct care and for secondary uses are kept completely separate, but I strongly suspect that this is not the case, indeed I know it is not the case. The problem is that the argument for data sharing for direct care is easy to win, so data is being collected ostensibly for this purpose, but surreptitiously used for all manner of other purposes. Direct care is a pretext for getting control of patient data, and once this is accomplished anything goes and there is nothing we can do to stop it. These local data sharing schemes are not for direct care only and opt outs cannot be trusted.
In general it is not clinicians whom I accuse of inappropriate data sharing, but the multiple layers of data processors to whom confidentiality means nothing at all and those who see patient data as a valuable commodity there to be exploited and there are a lot of those.
Person to person sharing would keep control in the right hands. If I am being cared for by a team, I imply my consent to necessary information being shared with that team, but I want my information kept out of a system I do not trust. I would never want my health data shared with local authorities, social services or private sector providers under contract to the NHS without my express consent. Without my consent it would be a gross invasion of privacy. Nor do I want to be exposed to population health management initiatives without my consent. This kind of thing, though unsolicited is treated as direct care and involves inappropriate sharing of records.
We can expect this to be just what is needed . . . for data processing, but not for patient care.
It’s not for data processing. It’s ye old getting a standard document layout sorted, ie standard headers. SOAP Mk2
Isn’t that for the sake of interoperabilty, ie data processing across organisational boundaries? Have I missed something?
In theory yes but we have a number of practicalities that mean what can be achieved is far yes:
CfH/NPfIT ‘push’ on SNOMED means we are unlikely to have coded medications.
It will take several years to get all the document sources to move to html plus standardised metadata. This gives a basic FHIR document.
We don’t have a basic/standard NHS FHIR API to simple data items, so trying to do something complex like a PRSB FHIR Document is running before you walk/crawl.
Getting documents laid out in the same way to aid is achievable but shouldn’t this have been done decades ago?
Cheers got it.
Yes I agree, I’m maybe being a bit optimistic that had died 10-20 years ago but it appears these processes are immune from any treatment.
“The evil that men do lives after them” . . . and after they have made off in search of greater prizes. I haven’t noticed any good to be “interred with their bones” when that should come to pass.
So whats different from what has been tried and failed previously? Please don’t say FHIR. How many Acutes in London, for example, have all their application integrated – None!
Yet via these standards, all healthcare records in London will be unified?
Follow the money!
Albert Einstein: The definition of insanity is doing the same thing over and over and expecting different results.
Publish the architecture and let’s discuss?
What’s different ?
The reason that it is so difficult to connect all healthcare records in London (other places exist too), is that suppliers have been allowed to create their own data structures, and hide them away, and over decades, the NHS has dreamed up new requirements for data collection, which each have implemented differently by the suppliers. Patients choose or are led to different treatment places where prior history may be missing, resulting in less safe treatment.
So what is different (as the article highlights), is the attempt to standardise clinically validated, NHS mandated structure.
FHIR is just the technical structure to put it in, but again standardised in a way that suppliers tell us is relatively easy to code (and therefore cheaper).
Getting it to work across London (or elsewhere) does depend on suppliers being willing to at least standardise their interfaces with other systems, and that takes not just these standards, but NHS organisations demanding that their suppliers adopt them, which will take time. Whether we are still sane at the end kind of depends.
The Interopen.org group at least has all the right partners in the room, including suppliers, NHS, Social Care, standards bodies and NHS England. It may not be perfect, but it feels the best chance we have.
Be interested to hear Neil Robinsons view of the proposed architecture? He is on the PRSB? Common Data Layer? Data Lake or Data Cesspit?
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